Elvis and the Stroke Clinic

I’ve been hankering after a dog for while; I can’t have one unless I move out of town. Dogs and working life just don’t go together. But I am noticing the sweet ones all over the place: in this case on the front of Freshly Pressed? [His name is Elvis, which gives me a scarily good title for this post!]

Elvis by Stefanie Kapra

So, to the Stroke Clinic…

I didn’t realise until I was waiting in the Macmillan lounge, next to a day ward full of people having chemo, that I had no idea what happens at a Stroke Clinic. I’m pretty sure strokes and cancer are very different things, but I did have that moment of “um… am I supposed to be here, and… eh?”. I might even have texted a Joe to say I didn’t really want to be back there at all, and I might have texted CG to say I was waiting in an odd place (CG’s advice upon hearing this: “Keep any eye on them and make sure they don’t try and amputate a limb”).

The good news was that it turned out to be Duncan taking the clinic (my doctor in Hospital Number 3). While this means I’ve still not met a consultant at Hospital Number 3, when someone you know and already get on with turns up, well, it makes everything ok.

Lots of you kindly emailed questions over and, here is a summary of what I learned today:

Warfarin/Drugs. Stick with it. There was surprise they hadn’t just raised my dose to 8mg. I said, “Yeah, I said that, but I also have to assume I don’t know what I’m talking about.” If it isn’t in the middle of the range by Wednesday he said to say, “yourstroke doctor said to raise it to 8”. I’ll see how that goes down…! We talked about alternatives but warfarin remains the drug of choice.

The offending clot. The clot has probably gone, but it takes up to 6 months for the artery to properly heal, so the drugs continue until then. There is no routine NHS scan in the new year but there is definitely one in January from the trial, so we shall see if that makes any difference. I’d like to be off the warfarin as soon as possible.

Thrombaphilia test. All younger stroke patients get written up for a thrombaphilia test. The view from my GP and stroke doctor is hat this will probably be a waste of time. They can clearly see I’ve had a dissection (arterial tearing) and “if I tore my artery, I hope it’d clot fast for me too”. I didn’t mention he might, however, prefer to skip the clot breaking up part!

Sleeping. I was asked about this before I raised it, but when I said I didn’t much it transpired the question was in the context of whether I lie awake thinking how crap life is! (Um, “No, I’m just thinking I’d prefer to be asleep.” This was probed a lot, presumably without the realisation that I know they check for depression at every available opportunity. In the end I short-circuited this one with something along the lines of, “I’m not depressed. Sometimes I have my moments of ‘this is all a bit shit, but that’s because sometimes it is actually all a bit shit, but that will change’’”. This got a kiwi smile (tough things to achieve sometimes!) and agreement. So no worries about sleep from them but – upon request – Tylenol PM was check out for me (on Wikipedia… got to love Wikipedia!) as I have some from the US, and cleared that against the Clex and the Warfarin, so I can take it if I want. (And I did take half a dose at 3am – see previous post!)

Flying/Travel Insurance. I’m cleared to fly. Airline regulations say 10 days (I didn’t mention this) and stroke doctor happy because its more than a month since it happened. It’s not like I can get a DVT (clot) with all the drugs running through this system. And on the travel insurance form I say one stroke: we know there were lots of little events, but it is one stroke event…. which brings me to…

Brain Stem. So I keep saying that I completely lucked out because the bits of clot only hit my cerebellum. Three times, but only hitting there meant only losing balance/coordination/concentration type things rather than central functions. This was lucky. Today I found out I was more than lucky. There was a puzzlement when I asked when the numbness would be gone – they ALL knew about the numbness when I was in the hospital – if it had only hit my cerebellum. So he looked up my scans again and checked my brain stem. “I’m trying to decide if this is an infarc(tion)”, he said, pointing at a shaded area “It must be, because that would explain why your lips are numb.” I’m not dwelling on this: all I shall say is that you don’t want any significant hits in your brainstem. It’s not a good place to mess around in. At all.

Timescales. There are none. They don’t do them for brain injuries. For example, “When do you think will the left side of my lips stop being numb?” = “I’ve no idea”. They literally don’t know; Duncan says people see improvement up to 2 years from stroke (and JBT says 8) which I think is meant as an encouragement. On the other hand, I’m planning on everything being normal in time for work in January. I said the GP had signed me off until then; he said “If you’re happy to do it, do it… but you can’t just dive in.” I promised a phased return would be planned. Not least because my colleague Patricia tells me that Capita will force it upon us anyway!

Headaches and Neck aches: You will remember I wasn’t so worried about these (they didn’t worry in the hospital so I didn’t see any point when I got home) but some of you were… Neck: “You tore an artery in your neck; it’s going to hurt sometimes while it heals.“ Head: “Does it throb or clamp; does the paracetamol work?” Paracetamol and going to sleep do work: he wrote it down and didn’t seem the slightest bit worried either.

So all normal, as these things go, and I don’t go back to that clinic until February, so must be a-ok.

Here’s there weird thing though. A couple of times before and since this all happened, I’ve felt like I might have slept oddly on the right side of my neck so I could feel it in the morning. Before the event I assumed it was the remnants of an injury from when I was 7 or 8. After the event I assumed it was the tear. But I checked today when he was drawing pictures and the tear is on the left side. So, whatever’s been going on, the tear was, and always has been, silent and unnoticed.